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Hi there1
I am new to this whole message board thing, but have a question. I am 33 and have had rrms since I was 17-am very lucky so far. BUT I switched to Rebif about 3 months ago, and had to stop Oct 12th due to elevated liver enzymes. From my neuro I am hearing 3 times normal level. I am no rocket scientist, but I AM NOT trying that again!! I have never had this before with any of the other drugs I have taken (Avonex, Copaxone and TY)- Nor have I ever felt this sick in my life!! Insomnia, HEADACHES, a 2 wk relapse ( which usually lasts 1-2 days) Any one familiar with this phenomenon? Thanks a bunch!!

Hi Thanks for your quick reply!
I was on full 44mcg for about 1 month before they got to the stage my neuro was pulling me. Serono said 5 times normal, and you are done with Rebif, but since I was only 3 times normal, they will want to re titrate me.NO NO NO!! I was sent info on the 4 (that I know of ) trials for the orals. Side effect listing looks too scary for a person with minimal problems. I don't even think my neuro has ever rated me on the edss. I go to Mayo in Dec, so we'll see.....

conandcait wrote:I was only 3 times normal, they will want to re titrate me.NO NO NO!!

I don't blame you. Your liver function is too important to take chances.

I have never had this before with any of the other drugs I have taken (Avonex, Copaxone and TY)- Nor have I ever felt this sick in my life!! Insomnia, HEADACHES, a 2 wk relapse ( which usually lasts 1-2 days) Any one familiar with this phenomenon? Thanks a bunch!!

Is there some reason you can't go back on one of the above, or didn't they seem to be working?

My wife didn't have any side effects, although afterwards she did mention feeling better after she quit taking Rebif.

Hey Bob,
Um...Copaxone I had huge grapefruit size injection site welts that were hot and itchy ( Allergic?) Um Avonex I was only using my upper legs and not my arms ( only 2 approved sites) and my legs have so much scar tissue that it hurt and I stopped doing it regularly ( I am a small person 125 lbs and my arms are skinny, and I just couldn't do it.) Also, Tysabri was okay for the 2 mos I did it till it was pulled. When it came back, my neuro was against it for rrms at least for me! I am curious about this "benign MS" I know, I know crazy woman who thinks she has faux MS, but just maybe......

conandcait wrote:Also, Tysabri was okay for the 2 mos I did it till it was pulled. When it came back, my neuro was against it for rrms at least for me!

In truth, that picture on the other thread? That's what happened to a thisisms member who offered medical advice to another. Despite that, how attached are you to your current neuro? You are the only one who is going to have to deal with future disability. YOU are the boss and the neuro is your employee. If you don't agree with your neuro, do the Donald Trump thing.

conandcait wrote:I am 33 and have had rrms since I was 17-am very lucky so far. I am curious about this "benign MS" I know, I know crazy woman who thinks she has faux MS, but just maybe......

What is the definition of "very lucky"? What disability progression have you seen in the last 16 years?

Hi! All I can say is Thank goodness he is retiring, because as his own clinical trial director told me " he has short timer's syndrome". I have had pretty much the same exact symptoms since I was 17. I had 2 episodes of falling down upon getting out of bed ( my PCP said stress, depression, tired, overworked, underfed etc..) and my right had pulls up to my side as if flexing my arm at my stomach level, my right leg drags, and I slur my speech. This usually lasts 5-10 seconds upon standing from sitting. It happens several times a day for a day or 2, then goes away. the REAL annoyance is that I have a PR background, am very well spoken, and for the life of me can NOT recall words!!!!!! I hate that more than anything!! After I stopped the last drug, Rebif on Oct 12 I had a 2 week relapse, I guess. Every day all day this "posturing" I stopped taking body pump at the gym the same time, and stopped working at the children's ministry office at my church, and quit subbing in my 1st graders class. I was doing all those things 2x weekly until Oct 12, then stopped it all, and had a 2 week episode! First time in 17 years I became pessimistic, first time I could envision a wheelchair in my future. Rebif, in my opinion was the beginning of my demise.

Well, that effectively ruined any chances of a Serono funded retirement pension for Arron! I can't say that anyone "likes" Rebif, but there are lots of people who do swear by it.

conandcait wrote:I have had pretty much the same exact symptoms since I was 17.

By any account it sounds like you've been very lucky.

To try to make some sense of the disarray, always keep in mind that the names of the phases of MS were based on observations after the fact, and involve nothing more, and have no more importance, than neuros in the process of discussions or writing articles needing to describe what they've observed after the fact.

It's not a comforting thought, but you can only be certain whether or not you had benign MS by dying of old age without further progression. Right now you're holding a lottery ticket for the drawing next Friday. Sure, you've got a premonition that you've won. You're certain that you've won. Just to be safe, don't order the Mercedes until Saturday morning.

It's your decision what treatment to use, if any, but your best bet is to consider that you've got the garden variety of MS, and that you've just been very lucky so far

I know, I know! Rebif is wonderful for so many people, and I am not disappointed in that, only happy that it is working for them! I asked a nurse if it was completely irresponsible to do nothing (knowing I have 2 small children) about my MS, and without hesitation she said yes, it's completely irresponsible. So, we will see what the Dr at Mayo says in Dec and if my LFT comes back normal in Nov.
Kelli

conandcait wrote:I asked a nurse if it was completely irresponsible to do nothing (knowing I have 2 small children) about my MS, and without hesitation she said yes, it's completely irresponsible.

Hi Kelli,
I'll probably get chewed out by the naysayers yet again but the current (hideous > < ineffective) treatments are just something to be endured in hopes of stalling progression for the next few years. Better things are on the way.
Bob

Hi,
I had this happen to me about a year into treatment. I was on Rebif44 and went down to 22 for a year and my liver enzymes were about the same levels as yours. I felt a bit nauseous and couldn't drink alcohol without feeling much worse.
They got back to normal within 2 months,

The enzyme levels have been ok for the last 5 years, back on Rebif44, near to the top of the normal range, but I don't feel ill.
I have never had any side-effects from Rebif and of course if a permanent cure came along, I'd be more than happy to give it up BUT, it did what it claimed to do. At the time of starting treatment, I think I'd had 6 relapses on one year and once it got going it was down to 1 or 2 relapses/exacerbations.
This year, I have had a lot of success with symptom relief and fatigue by following a Swank/BestBet type diet, but with more raw fruit and vegetables.
And....yippee, no relapse or exacerbation (symptoms reoccurring for more than 5 days) at all this year.
I'm not great yet, but a lot better - although of course it may have happened anyway....
If you can bear the side-effects on the lower dose and feel that it is working - it does take up to 6 months to work (2 for me) then I'd keep on with it - or change to Copaxone, which has fewer side-effects and no liver problems.
I hope you feel better soon,
best wishes,
K Roberts

Hey there!
Thanks for the reply. Did Copaxone first, with allergic reaction. The nausea? I thought it was all in my head!! Waves of slight nausea but the headaches are terrible. So you think it's worth re-titrating? I don't know what to do as My seemingly only options left are back on Tysabri or the 4 oral trials my neuro's nurse gave me. I guess I could go back on the Avonex, and just have someone else give me the shot. Hmmmm....Thanks a bunch! Kelli

Ooh bummer about the Copaxone.
The UK has just had the go-ahead for Tysabri for aggressive RRMS and the neurologists are getting started on treatments.
Did your Tysabri treatments stop because the neuro thought you weren't having aggressive relapses?
I guess in your position, I'd wait until you go to a different neuro. It's worth getting another viewpoint when you don't feel that you are getting treatment that helps. I would do that in your place!

It's awful soon after diagnosis (the first 12 months or so) because the MS is active and you are suddenly having to take note of symptoms that you would just ignore pre-diagnosis. I can remember just going from one relapse to another and wondering what state I'd be in when it all stopped.

Hi Katrine,
Thanks for the insight. I have been blessed, my Ms relapse/exacerbations are what Iwould consider mild. Irritating none the less, but mild. I stopped the Tysabri when it was pulled due to the PML, and my neuro said my MS wasn't aggressive or hadn't progressed, something like that. Didn't want me to do it again. I contacted University California at San Francisco, they are doing a Genetic Susceptability Study. My grandmother had MS, both my parents are living, and I have questions/ concerns about my own children. My 6 yo in particular- has my health issues- allergy/ asthma always a sick kid. My neuro, and Biogen all say they have no link/evidence etc... Just wonder if I am the only one in my own world who says Why? How? My doctor certainly isn't . But I'll go to Mayo in Dec and wonder if I will be received differently!?
Kelli

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